Hi Luca
I haven't been feeling that well lately and have had to get antibiotics just for an infeced ear ring hole! (as it was effecting the lymph or gland near it in my neck and was hurting the inside of my ear) I'm worried that this Hashi's is a death sentence as my organs will keep getting attacked. I'm sorry if I sound really negative, I think I am depressed, and I don't like to take pills but realize I may have to for my depression. My immune system doesn't seem up to par. Do you have, any advice? How do you stay healthy. And one other question, have you heard about The Marshall Protocol? It's hard to find a Doctor to do it in Canada, but I'm gonna try, because I would like to get cured not just take a ton of meds. Have you found anything that helps? I have been starting to exercise, and my feet throb let me knwo what your symptoms are if you care to share, Thank you for your time, I don't know anyone else with this disease. I live in Ontario and am 50 yrs old. Also did you go gluten free and if so did it help?
ccrew

Last edited by ccrew; 05-23-2012 at 08:17 PM.
Reason: one more question

I have hashimoto's. Being hypothyroid is par for the course with this disease. The antibodies attacking your thyroid will not go on to attack any other organs. Unfortunately replacement thyroid hormone will need to be taken for life (majority of cases) but this is just one little pill per day, unfortunately even taking that will not always diminish all of your symptoms, even tho your labs say different. Hashi's can make you feel really sick, I know, I have a lot of symptoms and there can be a lot of overlapping illnesses to go with it. I also have fibromyalgia, IBS and sinusitis. It is also possible that having one auto immune disease can pre dispose you to having another, or several. I'm not trying to worry you honestly just trying to help you understand a bit more about it, just be aware of your body and symptoms and learn as much as you can. It can be depressing and frustrating but hang in there.

Also, gluten can be a problem. I know that I am sensitive to it big time and will be going gluten free shortly to see if it helps. Just know that you are not alone, there are a lot of us understand what you are going thru. I hope I have been of some help to you? Feel free to ask more, I am by no means an expert on this but am willing to share my experience. Hugs gbear

Last edited by Administrator; 05-24-2012 at 12:21 PM.

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ccrew (05-24-2012)

Hi gbear76
So you have had this for a while, would you like to share your symptoms? If not that's ok. When I initially got sick a year and a half or so ago I quit smoking, and thought I would be all better! NOT Anyway when I got sick I was off for 2 months and gainner 35 lbs and feel really awful, I fear that I won't be able to loose it as it sounds next to impossible! My feet are throbbing now that I am walking for an hour a day, and it feels swollen under my jawl I know theres more but I am sooooo tired oh ya that's it! Chronicly exhausted! Going to Doctors next week to get another Endo, wish wae had a specialist ANYWHERE IN CANSAD! Where are you? OH and the time zone is wrong Hope to chat some more when I can keep my eyes open. Thanks for your reply, ccrew

Hi Ccrew,
I live in Australia and it is just as hard here. I saw 2 endo's who really weren't interested. They seemed to be more into diabetes. I had my meds, my levels looked good so "you're symptoms are nothing to do with the hashi's..see ya". BullS**T excuse me! So now it's just me and my GP. My symptoms are numerous and may or may not be all down to hashi's..it's long but here goes:

Aches & pains ALL OVER every day
Random stabbing pains all over including head
Headaches
Stiffness
Feeling exhausted/tire very easily from simple tasks/no energy
Wake up exhausted (struggle to drag my sorry arse out of bed!!)
Sinusitis/allergies - permanent cough, stuffy and runny nose
Numbness/tingling in arms. hands and fingers sometimes toes
Fingers go numb when cold
Intolerance to cold (I am freezing at 18 degrees C)
Occasional/fleeting vision problems (blurry)
Regular back pain (every day)
Itchy, dry skin
Pain in wrists when picking things up/carrying things
Tiny pinprick dots all over body
Daily nausea/sick to stomach feeling/reflux
Occasional sensitivity to light
Dry mouth
Never feel "well"
Brain fog/trouble finding words/forgetfulness
Lots of hair fall
Weight gain/belly fat - probably gained like 2+ stone (not sure what that is in pounds)
Joint pains/cracking - all of them
Also some weird blood results, I don't think are related but am currently under a haematologist who is testing a few things. I am low in folate too.

Well there you go, sometimes I feel like such a hypochondriac but seriously I go thru the above just about daily. Now some can be put down to the fibro, IBS etc but if you check the list for hashi/hypo symptoms most of them match too. My feet also throb if I walk for more than 1/2 hour and I too get that swollen feeling but behind my ears like my glands are up..oh I forgot to mention I also have a goitre (thanks hashi!!). It feels like a constant lump in my throat.
I do smoke, and drink. I couldn't go thru the stress of giving up I am soooo stressed with this already haha. With all that said and done I still work and keep house but it is soooo hard. I push on but it often leaves me ridiculously exhausted and in more pain for days after.
Yes I have heard it is very difficult to lose weight with this disease and that sucks.
I have heard people feel better on dessicated thyroid but it is hard to get. You need to find a doctor willing to prescribe it. I have no chance here, not sure how you would go in Canada? Anyway I have gone on lots, hope to hear from you and compare your symptoms. Take care gbear

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Hi gbear
First of all I am on desecatatd Thyroid, the brand name here in Canada is "Thyroid"
I'm sorry I don't have much time today as I have to go out of town (I live in a village) to get a 2nd mammogram (scary) they called me back, so hope it's just some of that "dense tissue" that they are seeing as that is ALL I NEED (Cancer!)
I'm exhausted for sure, work full time and try to "keep the house" LOL
I quit smoking in Sept. 2010 when my appendix ruptured (even though I went to the Doctors TWICE prior) anyway that's when I decided to quit (still want to though and have the occational) and I drink occationally.
I have been forcing myself to exersize for the past 4 days did a one hour walk along the lake here in town.
My feet throb also from my knees down feel inflamed as do my arms and under jaw (glands feel large puffed up although not swollen as in infected ) I don't heal well and just got stitches a week ago today in my hand (from chopping garlic) :0

The hypo and Hashis didn't get triggered until my appendix ruptured. Was it you that said it won't attack my other organs? This is what I have read that an autoimmune will attack the Thyroid and other organs as it is screwed up and doesn't know what it's doing basically. If you get any time to sit please look up The Marshall Protocol I want to do this and be CURED! However like you I am worried I won't be able to find a Doctor to do it and like you said there are TONS of Doctors that are for Diabetes but none for Thyroid all you get here in Canada are Endocrinologists not Thyroid or Autoimmune specialists

Have you heard that we should be Gluten free omg wish me luck with that I'm trying but :O .... Well I have more symptoms cough that comes and stays a long time, neck and back pain, some arthritis, they tell me periodontal disease and it is from Hashi's I looked it up (You can't tell I do take good care of my teeth) but still there you go Thanks Hashi's and I hate hate under my jaw puffiness! Nice to chat, have to go and get ready for my long day, staying a few days at my daughters as she lives in the city I go to for my 2nd mammo. So I will be away a couple days as I have days off work now also. Will chat more when I get back if that's ok. Thanks for your reply, maybe we can brainstorm! Take good care

bfn, ccrew

Last edited by Administrator; 05-24-2012 at 12:19 PM.

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gbear76 (05-27-2012)

Were you tested for the antibodies or do you just have a high TSH? How long have you had hypothyroidism? Hashi's can cause both hypo and hyper thyroid states, with the ultimate state usually being hypo although you can also ultimately rarely end up euthyroid, meaning neither hyper nor hypo. There are other very, very rare complications of Hashi's that can occur, as one or two people on the boards can attest to, but I don't generally recommend reading about these complications on the internet as it seems to only give worst case scenarios, never the experiences of the vast majority of people. If you do read, please bear in mind that much of what you may read is not medically proven at best, and dangerous at worst. Be careful of the credentials of your information. I alternated between the hyper and hypo states early on in the course of my disease, as does my daughter. Gbear is correct that the antibodies will not attack other organs. Chronic fatigue and depression, along with thickened skin, heat/cold intolerance swelling of your fingers are all symptoms of a hypothyroid state. Getting your synthroid dose optimized for you personally is the key and it can take time and does vary occasionally throughout the course of your lifetime. BTW I'm 51 and depending where you live in Ontario, I might be your next door neighbor as I live along the southern shore of Lake Ontario. Forgive me for being a bit disjointed but I'm trying to address your concerns and am scrolling up and down, LOL. Hashi's cannot be cured. Not everything can, at this point in time, whether we like that fact or not. It can, however, be easily controlled. Yes, it is rare but celiac disease can go along with Hashi's. Going gluten free is an option for anyone, even if you do not have celiac or any gluten problem. It can be expensive and is not easy to do. You must avoid wheat, barley and rye, as well as reading every ingredient label of every bit of food, including such things as jarred powder spices like poultry seasoning to toothpaste to soy sauce. You cannot use the colander in your kitchen that you use for regular cooking and must buy a new one that has never been used to cook wheat based pasta. Same for cutting boards. Pain in the arse to do but it certainly will not hurt you or anyone else to go gluten free. You can also be tested for Celiac disease by a simple blood test, although biopsy is the gold standard. If going gluten free makes you feel better though, there is absolutely no harm to come from it. As for Marshall's Protocol, yes I've heard of it. Some people swear by it and others think it's dangerous. I myself think it's silly to waste time and energy on it, but I'm not a Dr and that's who you should be talking to about it. I have been on thyroid replacement therapy for many years quite happily. It is also true that if you have one autoimmune disease, you may get another, but that again is exceedingly rare, and the vast majority of people do not. I am one of the lucky rare people who does have other autoimmune diseases. IMHO, I think that exercising as you are, is great. If your feet are giving you problems, check your shoes. They may not be giving you the support you need. It may also be that you are pushing your exercise regime too hard. Just things to take a look at that may be quick fixes for specific issues. That being said, gbear is right on when she says that many Dr's ignore symptoms such as tendonitis and hypercholesterol, and alopecia. It takes time to pinpoint your personal ideal medication level (and no I don't fall into the dessicated thyroid therapy is best camp - too unreliable). My main symptoms were coarsening of skin, fatigue, hoarseness, stupidity, and alopecia on the hypo end, once my disease progressed.

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ccrew (05-27-2012)

I was diagnosed a few days ago with Hash's But have been suffering with symptoms for a few years. Finally being diagnosed my dr's still refuse to treat me I feel like im going to be suffering for ever before any dr will treat me. UGH most frustrating is to know you have it but no dr even cares to treat it. yeah I know im not as young as I once was... but im only 27 why should I suffer with hair loss and aches and pains and most of all unable to lose weight no matter diet or exercise! I eat 1000 calories each day, and do 45 minutes of cardio 5 times a week... and with my fatigue its all of this working out is IMPOSSIBLE but I still do it just to see if MAYBE I can beat the symptoms. I spent the last few days crying and feeling like im crazy for seeking a better quality of life.

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ccrew (05-27-2012)

Hello Luca 689
I have been diagnosed hypo since Dec. 2010 when my TSH was 100. I had told the Doctors here several times that not only did I have a family history of Hypo, but that in a year or two back I told them that a TSH of 9 was too high for me, they told me that I was wrong and one Doc even said 'You don't even need Thyroid tests" !!!!! I was tested just days ago, for Antibodies don't have the results yet, but I was dx'd with Hashi's by an Endorinologist last fall. I am not on Synthroid and they couldn't get that right any better than they can the "Thyroid" (natural) likely due to the fluctuation of Hyper/ Hypo, as mentioned, and I do believe that natural Thyroid is better as it has the t4 and the t3 as absorption/ conversion can be a problem, (I also wonder if Vitamins and minerals are properly absorbed having Hashi's). As for the issue of going Gluten free, Thankfully I don't have celiac so I don't have to be as particular as you mentioned with going Gluten free, and "traces" such as colanders and cutting boards won't be a problem, as I am not allergic, just choose to as it is not a natural substance for our already struggling bodies to cope with, these are different issues. From my research it is not rare for people who have one autoimmune to get more and there is data to prove this under the Marshall Protocal for Hashi's, that not only is it not rare, but it's the norm. As for my feet I have custom made orthotics by a Doc who has high tech equipment. So it's not my footwear, as they are made for my feet, I suspect inflammation, as is par for the course with many diseases, and Hashi's being one of them. I wake up with throbbing feet so it's not just the exersize. I do plan to talk to Doctors about The Marshall Protocall as well as Hashi's ongoing and I will press for as many Doctors as it takes to get some relief. I also have tendonitis of the (R) shoulder, from a fall that I had last September. I got sick 2 times this past winter and usually I don't, also had to take antibiotics just for an infected ear ring hole (that was actually hurting the sensitive inside of my ear due to the glands behind it in my neck being inflammed), so I know that my immune is not working correctly. Fatigue and depression are getting worse so I am going to my Doctor this week coming. I don't like to take pills that are unnatural so I am at odds as to what to do for the depression, and the fatigue I doubt there is much that can be done). I have just purchased some natural stuff for my immune (Astragalus) and a milk thistle combo to keep my liver detoxed). You are right about being cautious with information, but that being said when the help is few and far between here in Canada with only Endo's to see one has to take action for self help and self education as I can't speak for anyone else but my Doc doesn't know much about my disease and the Endo dx'd me and sent me home! Not enough for good health care IMO, as being dx'd is the beginning for me, not the end! Also I don't think that 1 hour of low impact exersize is too much, Thank you for your time, C.

Last edited by ccrew; 05-27-2012 at 07:19 AM.
Reason: forgot one topic

Alleymom 2003
Hello, I want to say I'm sorry to hear that you have the Hashi's DX dropped on you at such a young age! What do you mean by they refuse to treat you? It seems like there are no Doctors that do just Thyroid or Autoimmune or that specialize in Thyroid or Autoimmune in Canada, all I can find are Diabetes Doctors. I found one that I am going to try in Toronto.
I have had to fight before for my daughter's conditon so I know both how hard it is and how it CAN be done, so onward I go. I really want to find a way to loose this 35 lbs I gainned with it as well! The one good thing is that I don't keep gainning but not looseing either ! All we can do is keep researching and talking to others as we are, I like to be proactive as I now have a beautiful grandson that I want to be around to see grow up so I want to do whatever I can to be healthy and happy! If you find anything interesting out please post as I hope every one will do. Thank you and I hope you can get some relief soon! ccrew

Hi gbear
First of all I am on desecatatd Thyroid, the brand name here in Canada is "Thyroid"
I'm sorry I don't have much time today as I have to go out of town (I live in a village) to get a 2nd mammogram (scary) they called me back, so hope it's just some of that "dense tissue" that they are seeing as that is ALL I NEED (Cancer!)
I'm exhausted for sure, work full time and try to "keep the house" LOL
I quit smoking in Sept. 2010 when my appendix ruptured (even though I went to the Doctors TWICE prior) anyway that's when I decided to quit (still want to though and have the occational) and I drink occationally.
I have been forcing myself to exersize for the past 4 days did a one hour walk along the lake here in town.
My feet throb also from my knees down feel inflamed as do my arms and under jaw (glands feel large puffed up although not swollen as in infected ) I don't heal well and just got stitches a week ago today in my hand (from chopping garlic) :0

The hypo and Hashis didn't get triggered until my appendix ruptured. Was it you that said it won't attack my other organs? This is what I have read that an autoimmune will attack the Thyroid and other organs as it is screwed up and doesn't know what it's doing basically. If you get any time to sit please look up The Marshall Protocol I want to do this and be CURED! However like you I am worried I won't be able to find a Doctor to do it and like you said there are TONS of Doctors that are for Diabetes but none for Thyroid all you get here in Canada are Endocrinologists not Thyroid or Autoimmune specialists

Have you heard that we should be Gluten free omg wish me luck with that I'm trying but :O .... Well I have more symptoms cough that comes and stays a long time, neck and back pain, some arthritis, they tell me periodontal disease and it is from Hashi's I looked it up (You can't tell I do take good care of my teeth) but still there you go Thanks Hashi's and I hate hate under my jaw puffiness! Nice to chat, have to go and get ready for my long day, staying a few days at my daughters as she lives in the city I go to for my 2nd mammo. So I will be away a couple days as I have days off work now also. Will chat more when I get back if that's ok. Thanks for your reply, maybe we can brainstorm! Take good care

bfn, ccrew

Hi C,

I'm soo sorry about the mammogram call back, you must be worried sick. Any call back is scary. Sorry I haven't replied sooner, I have not been on here for a few days.
Yes everything i have read/researched on hashi's says that the antibodies are thyroid specific, I will look into it more As I will the Marshall protocol...must admit i have never heard of it.
So you are on dessicated...and it hasn't helped? Well that sucks too. I hate to think that this is the way I will be for the rest of my life, I sure to get down about it sometimes.
Would sure love to "brainstorm" LOL and chat more when you are back. And good luck with the gluten free!! We can compare how it's going, although I haven't started yet.
I hope you have a good few days with your daughter and REALLY hope for you that the call back was just a false alarm. Chat soon and take care G

Hi GB76
I just got this now and am off to work (I work mostly nights).
I'm not totally gluten free, just started and have a few things to finish up, lol although mostly gf ! I am not recomending ANYTHING just to read that's all. I am pressing for more Doctors, and care I go to my Doc this week coming. Yes we will brainstorm and share sounds good!
They say they couldn't find on the Ultrasound what they saw on the Mammogram so hope it's just that (a false positive) back in 6 months to Do it all over again. I too thought things would be "better" on natural thyroid but they aren't hormones are into play and pretty messed up due to it all I would say. I pray I can find a way to feel better also, working at it researching and reading! Well going to work, TL, C

Hi C
I am so pleased for you that nothing was found, hope it stays that way in 6 months
I too am 'kinda' gluten free at the moment! Like you I have a few things to finish up plus a weekend away soon so total gluten free will start when I get back lol. I am really hoping it will help, otherwise I am totally at a loss with what to do.
Just a little off topic but still related to pain, I am doing hydrotherapy and physio due to having hip surgery, however this is also supposed to help with fibro (or as I believe hashi pain!!) and I must admit the warm water makes exercising easier. If it helps just a little with the pain I am willing to do it long term. Have you tried it yourself? If not it might be worth a go just for the gentle exercise itself. I know I end up in a lot of pain from land based exercise and I remember you said how your feet hurt just from walking? Anyway hope to chat soon. Take care G

Hi G
Yes, water is very good for me, I like to have Jacuzzi's (we have a kidney shaped Jacuzzi tub) and I love to swim. We don't have "hydrotherapy" here but I can do my own, water stuff always have loved being in water as long as it's not too cold of course.
Yes from what I understand Fibro and CF seem to be linked to Hashi's, and the feet, well hurt is over exaggerated, iti's hard to explain, they throb and are sensitive like a gental burning, don't know how else to descdribe it, but it's not really what I would call Pain...
Speaking of which I have Doctors and a double shift at work so I have to get in my long walk along the lake first, I have been posting pics of my walks (it is beautiful here) along the lake in ********, my cell doesn't have a High def camera to say the least, but I believe it gets the beauty of this village in what we call "Cottage Country" in Ontario, Canada. There is even an old mill waterfall a few blocks from my home along a beautiful path, then I walk the path along the lake, and back and around the paths of the park twice. So it's a good long walk, and I stop to take pics all the time and plaster on ******** When did you have hip surgery? That must have been tough! Was the joint worn out? Is that what happens with needing hip surgery? Hydrotherapy sounds PERFECT for that (and I love water also) Well I have a long day and will be informing my Dr that Research is my Strong suite NOT Summerizing it LOL! Wish me luck with that! BFN , C (BFN = bye for now)